The Pendulum Swings Hard

Autism,

Rmedal

Sometimes the pendulum swings so hard in our household, I get emotional whiplash over the course of a week.

Both of our boys are on the spectrum, but their issues are wildly different. Theodore had significantly delayed speech but Radcliffe talked early, but their IQ’s are roughly equivalent, meaning that while they couldn’t be further apart on the spectrum, they are landing in a very similar spot. What works for one won’t work for the other, yet what won’t work for the general population, will work for both of them.

It’s exhausting.

We work hard in this house to focus on the magic, on their gifts that they alone have. But we have highs and lows, just like everyone else.

Radcliffe struggled with reading comprehension and has had to have intervention in school. While driving home from tutoring last year, he choked up and said, ‘I’m just not smart like my brother.’

I pulled over and sternly told him that wasn’t true and explained how everyone has special gifts. That seemed to suffice that day, but it has always lingered in the back of my thoughts. Until then, our biggest problem with both of the boys were their social skills, and I worried about adding one more damn thing to this poor child’s plate.

Radcliffe’s magical gift is that he’s basically lunacy at work. He is creative with no confines or structure to hold him back— a dream most artists would covet.

Last week, we went to the Young Author’s award ceremony for the region. We knew he placed in the region for poetry, but they don’t tell you if you’re first, second, or third. All first place winners automatically go on to the state competition.

We made a big deal about, and told Radcliffe we would take him to dinner before for whatever kind of food he wanted. He wanted to try ribs for the first time. Um, okay?

RribsCelebrating. Theodore is smiling, which means the apocalypse is coming.

When we got to the ceremony, they announced he was first place in poetry for the second grade — which meant he went on to state. And then they announced that he placed second in the state for poetry — the only kid in the region, kindergarten through twelfth to place in poetry. I was screaming like a maniac, jumping up and down. I almost felt sorry for the other people in the audience.

That high lasted all week. We’re making progress, I thought.

Then today happened.

He got off the bus crying and by the time he walked into the house, it was a full blown meltdown. I was able to get him to calm down and I took him to tutoring. On the way home, I had promised the boys fast food for dinner tonight, and I started driving that way, the opposite way of our normal route home.

During this drive, I started a phone conversation. It was wrapping up, and I pulled into the fast food parking lot and put the car in park. I started to hear dry heaving from the back seat and sobbing in between heaves.

The phone call lasted 3 minutes from the time I parked to the time I hung up.

He was dry heaving and sobbing because I stopped the car.

I had a flashback of my daily drives home from preschool with Theodore and how he would vomit all over the backseat if I took a different way home.

And then I had a flashback of the pediatrician giving me the best advice I’ve received since being a mom:

‘Make him as uncomfortable as you can stand it. It will exhaust you, but it will push him and desensitize him. It will be harder for you than it is for you.’

My job as their mother is not to make them comfortable, but to make them uncomfortable — to stretch them to their limits, so they know their limitations are only what they themselves set. It’s working, but dear God, is it so damn hard.

I refused to move the car until he got ahold of himself, which meant we sat in that parking space for a good fifteen minutes. My stubborn streak serves me well in these situations. He finally pulled it together, but didn’t speak to me for another hour.

When he finally came around, we had a pleasant bedtime. Exhausted, I came downstairs to start my nightly chores. While cleaning up, I found an extra copy of his poem on his desk. It was the reminder that I needed that this exhaustion is so very worth it.

Happy

Happy is flying in the air on Maw-me’s tire swing.
Happy is the song I sing.
Happy is time at Laser Tag
Or watching a movie that isn’t sad.
Happy is spending time with my nice little dog, Ruby.
Happy is fun and eating yummy eggs.

Judy Blume is Our Milestone

Autism, Parenting, Serious Stuff,

JudyBlume

I was told recently that my family was one of ‘the lucky ones’, a term thrown around to parents of children with autism who are higher on the spectrum than others.

I’m always conflicted on how I feel about that term. Yeah, I guess we are ‘lucky’ because both boys are much higher on the spectrum than most, but how are we lucky when both children are on the spectrum? They both have high IQ’s, much higher than their peers, but significantly struggle socially—something that while the IQ will get them the places they want to go in life in terms of a career, they need the social skills in order to play well with others once they get there.

Years ago, for Radcliffe, I had to fill out parental assessment forms for the school to do his IEP. That moment my stomach sank when I self scored the test will be forever seared into my memory. In case you don’t ever have to do it, let me just tell you—it sucks. You are holding in your hands a four page document that scores every single inadequacy your child has, the one that you are so proud of, beaming with pride over, all of his issues summed up into a number, tallied by your own words.

We are coming up on his 9th birthday, which means it is time to redo his IEP. The district psychologist called me today to discuss it, and I went on and on and on forever about how proud I am of all of his progress and how much better he is doing. At the end of the conversation, she told me she had sent home a packet of the parental scoring forms that needed to be done again.

Oh.

So, I filled them out. I thought for sure with all of the milestones and progress we had made that the numbers would be so much better, so significantly less that I could pat myself on the back for a job well done after a nine year struggle.

And then I tallied the numbers up. And the numbers are almost the same.

There are so many cuss words I could write about this, so much I could scream about it, so much I could throw myself on the floor and throw a tantrum about, so much I can worry about because I JUST WANT HIM TO BE OKAY AND LIVE THE LIFE HE WANTS TO LIVE WHEN HE GROWS UP FOR GOD’S SAKE.  It is so deflating.

Sometimes, it doesn’t seem like all of those milestones, all of that damn tedious crap you do in order to make them better, doesn’t amount to anything.

But it does.

After I finished scoring the tests, I walked upstairs to tuck the boys in, and read to Radcliffe. This child, who seems like the strangest child I’ve every encountered on many days, is my creative counterpart. Most days, he doesn’t like to read on his own, but we have taken up to me reading him a chapter every night out of a Judy Blume book. He snuggles up to me, underneath his train Pottery Barn blanket that ‘normal’ boys have, and asks me questions and we bond over our love of a story well told.

And then I wonder…what if he wasn’t on the spectrum…what would he be like? What would his brother be like? What would our lives be like? Would they be playing outside with all of the other little boys in our neighborhood? Would they love playing sports like them, throwing the ball in the yard?

The truth is that I don’t want that. Even with the setbacks and heartbreak, I have been given the sons I was meant to have, the ones to stretch me and teach me as much as I teach them and I want them exactly as they are. They are incredible, and while the milestones may be small and minuscule, they are still milestones, and everyone—-even those of us not on the spectrum—is reaching for their next milestone.

So for tonight, my milestone is reading to my freckle-face sweet natured boy who loves Judy Blume as much as I do, and making sure he falls asleep feeling loved. Everything else can wait.

GET QUIET AND LISTEN UP

Parenting, Serious Stuff

SleepingR

I haven’t been to church in a really long time. A very long time. Years.

I live in the deep South, which makes this an unusual occurrence. I was raised both Catholic and strict Southern Baptist, with varying degrees of ideas of what made a good Christian. While in college, I settled into Episcopalian faith. It fit me. It didn’t judge me for not being a particularly religious person, but more of a spiritual one.

We moved, we had kids and I tried to go. But it just didn’t work. I became disenchanted with people that claimed to be a Christian, but only had harsh judgements for others for things they themselves did. I struggled with knowing that the people that hurt me as a child hid behind the teachings of Christ. I struggled when people told me that God only gave me what I could handle, because that’s not my God. I wondered where I belonged in that equation because I just struggled to understand. I had to stop asking to understand, because I know I will never get the answer that I want.

We are all works in progress, though, including myself. And with age comes this hard earned wisdom. This last year I have struggled with the demons from my childhood. As in, I am struggling.

I got hours and hours and years and years of help as a teenager/young adult. And I thought I was okay.

My therapists warned me that while I might feel okay, once I had children, I might feel differently.

I had two children. I did not feel any differently. I thought I was okay.

And then last spring, it hit me like a ton of bricks. I was tucking my sleeping child in, covering his tiny body up with a blanket staring at his freckles and all of a sudden, I could not breath. No matter how hard I tried, I couldn’t inhale and this giant weight sat on my chest.

I was staring at an innocent child the same age that I was when all of the horrific things I worked through happened. The same things that my body is still paying for. The same things that cause me to pause daily.

The overwhelming shame, the anger, and the failure to understand flooded back, blindsiding me and no matter how hard I have tried to breathe, it gets harder. I get angrier and sadder at the same time. The more I try to understand, the less I understand how I share the same world and breathe the same air as these repugnant people.

I’ve gotten much quieter this year with these new emotions, grasping at the slivers of childhood joy I’m watching unfold in front of me, grieving the childhood I’m watching my children have, but that I’ll never know. They have, in all its glory, the innocent childhood I wanted for them. The more joyous I am about that, the more painful it is that it was stolen from me. I’ve gotten quieter because I can’t hear what the universe is trying to tell me because I’ve been drowning in this external noise of pain. I’ve gotten quieter because I need to hear what is being told to me.

Last night, I felt the urge to go to church for Ash Wednesday services. So, I got up today, got ready, and went to church.

I sat there, in a back pew, staring at the exquisite ceiling and the light streaming through the stained glass windows and wondered if I should be there. I thought just get quiet enough to hear. In this very moment, be silent and listen.

The rector started the sermon by referencing the AA meeting that was going on in the next building. He said he was always amazed how well it worked, but he knew why—- because we bond in our brokenness. That we are not perfect, especially not the strong ones of us, and we all need to know that we are not alone in our struggles. We are taught not to talk about our struggles, especially in the South, you just don’t discuss the hard things. He urged us to talk about the hard things, our brokenness, and in that, we heal together.

I started to cry in the back of the church. I’m not alone, and neither are you. My husband, family and closest friends have known I am struggling, but today I am sharing it with you in the hopes that if you need to read this, that you will, and know that it is okay and we are broken together. So you know that even the strongest struggle with being broken. Sometimes, the scars we thought were healed, are really partially still scabbed, and must be healed from the inside out. And that’s okay.

Because no matter how much therapy, no matter how much healing has happened, the pain and continuous striving to heal will never end. That, the acceptance of that, the never-ending pain, no matter how much less it will one day be, because it is already so much less than it once was, is the hardest part of this journey. This is the most surprising, almost startling realization to me, that it will never end. Because, I, like you, am a work in progress.

This Lenten season, my hope for you is to get quiet and listen. Take whatever your higher being/God/universe is trying to tell you and LISTEN UP. I hope that you acknowledge your brokenness and not regress with defeat. I hope your scabs heal and turn into hard earned scars. Lessons abound when you are humble enough to see them.